The French State records data of pregnant women without their approval !

The French Ministry of Health established a system to record data of the 700,000 pregnant women by using only one criterion: the probability of the child to have Down syndrome !

In order to protect women, children and healthcare practitioners, 21 parties have contested this data recording system: the Jérôme Lejeune Foundation, the collective against handiphobia, healthcare practitioners, and women who have already done prenatal screening.

On November, 17th 2017, the French State Council announced a mixed decision.

The Jérôme Lejeune Foundation succeeded to have the decree of May, 11th 2016* organizing the data recording system of Down syndrome partly annulled.

However, the data recording system is maintained on a national level. The French Agency of Biomedicine (ABM) will keep centralizing the private data of women without their approval.

To break the code of silence which is currently lingering over this data recording system for pregnant women and babies with Down syndrome, please share our campaign !

This data recording system seriously harms the freedom and dignity of many people.

This data recording system harms women’s privacy

This data recording system is used by the French State to keep women under surveillance, without their approval, in the sensitive healthcare domain. Furthermore, this system forgets that pregnant women have to be informed that their private data will be used as soon as they accept prenatal screening. Yet, out of respect for their privacy, women should have the possibility to refuse their data to be recorded in the national file, as it is demanded by the French National Commission for IT and Freedom.

This data recording system stigmatizes and discriminates children with Down syndrome

Down syndrome is the only illness which is specifically targeted by this data recording system. To make an inventory of all the babies who were born on a national level and according to their gene pools leads to the idea that there is a “norm” that people with a “deviant” genome would not comply with.

This data recording system harms doctors’ independence

Doctors have to hand the private data of the women they follow to the State; this goes against their professional freedom and the convictions of those who think that the goal of medicine is to take care and cure ill people – not to get rid of them.

This data recording system increases State eugenics

“State eugenics can exist even if there is no real desire from the government to get rid of the targeted population. This is exactly what happens in France: for 20 years, political leaders have been creating obligations which, taken all together, draw the intention and collective reflexes that lead to the massive elimination of children with Down syndrome. Today, implementing a national data recording about Down syndrome, an illness whom the diagnosis can lead to a decision either for life or death, goes in the same logics.” Jean-Marie Le Méné, chairman of the Jérôme Lejeune Foundation, Les Premières victimes du transhumanisme.

*Decree of May, 11th 2016 modifying the decree of June, 23rd 2009 establishing the good practice guidelines in terms of Down syndrome prenatal screening and diagnosis with the use of serum markers from the mother – published in the Official Journal of May, 18th 2016.

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The goal of the Jérôme Lejeune Foundation, a recognised public interest organisation, is to continue the work to which Professor Jérôme Lejeune, discoverer of Down syndrome, devoted his life: medical research on genetic diseases with intellectual disability, receiving and treating children and adults with Down syndrome or other genetic defects of intelligence ; in offering specialised medical consultation treating all their pathologies linked to their disease ; the defence of life, the respect for the patient's dignity, with a constant ethical focus and active solidarity, from the beginning of life until death.